Tara,
So sorry to learn of your pain and ongoing symptoms with this. Brody is 1 in 113 that have Blau and many question if Blau and EOS are related. The granulomas that brody has throughout his body/organs (internally) are non~ caseating. Your symptoms sound like an overlap and I question MCTD as well. Many are learning that Blau patients do have cardiac involvement and cranial neuropathy.
I would be happy to speak with you and welcome you to visit my site at www.stopCAIDnow.org
please feel free to call 1.877.CAID.644
Brody must have an overlap as well because without his treatment he would not have survived this. We can discuss more about you and how to get you the help needed. Most of CAID all have very similar symptoms but have different mutations that are defected. We have the first CME on CAID being offered soon and it will help many Doctors learn more about these diseases.
Thank you,
Lisa

We have no known prognosis for Blau. Do you have it? Are you on medication. My 2.5 yr old has Blau with some overlap of CAID and takes adult dose of injections/medication daily.
Thank you,
Lisa Moreno-Dickinson
President/Founder for StopCAIDnow.org

If anyone is interested in sharing your child's photo or story please email me at StopCAIDnow@aol.com
Mike Quick(5x pro bowler for the NFL) and I are producing a video for the Foundations homepage. We welcome your VOICE and pictures to be added to the video. We will also use the pictures or videos at the Gala. The Gala will be covered by the media, so if you do not want the exposure please do not send your picture. We will not list any names or personal information on either the video for the homepage or the Gala. If you send in a video of yourself talking and choose to say who you are and what your child has, that will be the only way we will share your personal information. We want to share your story, your pictures the way you want it to be shared with the world.
Thank you,
StopCAIDnow,Inc.

Please visit my site to learn more about Project 1. StopCAIDnow partnered with the Cleveland Clinic to develop a CME program for Childhood Auto Inflammatory Diseases.
This program will commence with a ten-part, web-based CME series with dedicated modules for various Childhood Auto Inflammatory Diseases including Blau Syndrome.
This program is powerful in helping physicians get additional training and education about these rare and debilitating diseases.

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CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

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Complete the screening form.

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Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

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Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.